ReseArch with Patient and Public invOlvement: a RealisT evaluation - the RAPPORT study

Background Patient and public involvement (PPI) is a prerequisite for many funding bodies and NHS research ethics approval. PPI in research is defined as research carried out with or by the public rather than to, about or for them. While the benefits of PPI have been widely discussed, there is a lack of evidence on the impact and outcomes of PPI in research. Objectives To determine the types of PPI in funded research, describe key processes, analyse the contextual and temporal dynamics of PPI and explore the experience of PPI in research for all those involved. Mechanisms contributing to the routine incorporation of PPI in the research process were assessed, the impact of PPI on research processes and outcomes evaluated, and barriers and enablers to effective PPI identified. Design A three-staged realist evaluation drawing on Normalisation Process Theory to understand how far PPI was embedded within health-care research in six areas: diabetes mellitus, arthritis, cystic fibrosis, dementia, public health and learning disabilities. The first two stages comprised a scoping exercise and online survey to chief investigators to assess current PPI activity. The third stage consisted of case studies tracked over 18 months through interviews and document analysis. The research was conducted in four regions of England. Participants Non-commercial studies currently running or completed within the previous 2 years eligible for adoption on the UK Clinical Research Network portfolio. A total of 129 case study participants included researchers and PPI representatives from 22 research studies, and representatives from funding bodies and PPI networks

The UK Expert Patients Program: Lessons learned and implications for cancer survivors’ self-care support programs

Globally, the enablement of self-care is increasingly being recognised as an essential component of chronic disease management. Within the UK a key self-care policy initiative is the Expert Patients Program. Developed from the Chronic Disease Self-Management Program, this is a 6 week self-management education program for people with different chronic diseases, facilitated by lay volunteers. As an example of a major public health initiative designed to enhance self-management in long-term conditions, this paper draws on evaluations of the EPP and CDSMP and analyzes the implications for the development of similar programs for cancer survivors. There are a number of evaluations of the CDSMP which suggest significant improvement in participants’ chronic disease management self-efficacy and some evidence of healthcare utilization reduction. However, whilst the national evaluation of the EPP demonstrated similar improvements in self-efficacy and health status, there was no significant effect on healthcare utilization. Trials of such programs need to be treated with some caution as participants are often not typical of the general population, and as a complex intervention effectiveness is inherently difficult to assess. Qualitative evaluations revealed that the EPP’s strength was derived mainly through peer support and learning. Nevertheless, a number of contextual problems were identified including recruitment, clinicians’ lack of engagement with the program and inflexible course materials. Lay-led self-care support programs such as the EPP have a significantly positive effect on self-efficacy which could be of benefit to cancer survivors. However, a number of lessons should be learned from the EPP when developing similar initiatives for cancer survivors

Editoriale. Ciò che la Psicologia ci dice delle scienze del nostro tempo

This is the final version of the article. Available from the publisher via the DOI in this record.Background: Chronic musculoskeletal pain is a common problem that is difficult to treat. Self-management support interventions may help people to manage this condition better; however, there is limited evidence showing that they improve clinical outcomes. Our overarching research question was ‘Does a self-management support programme improve outcomes for people living with chronic musculoskeletal pain?’. Aim: To develop, evaluate and test the clinical effectiveness and cost-effectiveness of a theoretically grounded self-management support intervention for people living with chronic musculoskeletal pain. Methods: In phase 1 we carried out two systematic reviews to synthesise the evidence base for self-management course content and delivery styles likely to help those with chronic pain. We also considered the psychological theories that might underpin behaviour change and pain management principles. Informed by these data we developed the Coping with persistent Pain, Evaluation Research in Self-management (COPERS) intervention, a group intervention delivered over 3 days with a top-up session after 2 weeks. It was led by two trained facilitators: a health-care professional and a layperson with experience of chronic pain. To ensure that we measured the most appropriate outcomes we reviewed the literature on potential outcome domains and measures and consulted widely with patients, tutors and experts. In a feasibility study we demonstrated that we could deliver the COPERS intervention in English and, to increase the generalisability of our findings, also in Sylheti for the Bangladeshi community. In phase 2 we ran a randomised controlled trial to test the clinical effectiveness and cost-effectiveness of adding the COPERS intervention to a best usual care package (usual care plus a relaxation CD and a pain toolkit leaflet). We recruited adults with chronic musculoskeletal pain largely from primary care and musculoskeletal physiotherapy services in two localities: east London and Coventry/Warwickshire. We collected follow-up data at 12 weeks (self-efficacy only) and 6 and 12 months. Our primary outcome was pain-related disability (Chronic Pain Grade disability subscale) at 12 months. We also measured costs, health utility (European Quality of Life-5 Dimensions), anxiety, depression [Hospital Anxiety and Depression Scale (HADS)], coping, pain acceptance and social integration. Data on the use of NHS services by participants were extracted from NHS electronic records. Results: We recruited 703 participants with a mean age of 60 years (range 19–94 years); 81% were white and 67% were female. Depression and anxiety symptoms were common, with mean HADS depression and anxiety scores of 7.4 [standard deviation (SD) 4.1] and 9.2 (SD 4.6), respectively. Intervention participants received 85% of the course content. At 12 months there was no difference between treatment groups in our primary outcome of pain-related disability [difference –1.0 intervention vs. control, 95% confidence interval (CI) –4.9 to 3.0]. However, self-efficacy, anxiety, depression, pain acceptance and social integration all improved more in the intervention group at 6 months. At 1 year these differences remained for depression (–0.7, 95% CI –1.2 to –0.2) and social integration (0.8, 95% CI, 0.4 to 1.2). The COPERS intervention had a high probability (87%) of being cost-effective compared with usual care at a threshold of £30,000 per quality-adjusted life-year. Conclusions: Although the COPERS intervention did not affect our primary outcome of pain-related disability, it improved psychological well-being and is likely to be cost-effective according to current National Institute for Health and Care Excellence criteria. The COPERS intervention could be used as a substitute for less well-evidenced (and more expensive) pain self-management programmes. Effective interventions to improve hard outcomes in chronic pain patients, such as disability, are still needed.The project was funded by the National Institute for Health Research Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 4, No. 14. See the NIHR Journals Library website for further project information